Living with Merkel Cell Carcinoma (MCC): Development of a Conceptual Model of MCC Based on Patient Experiences

Abstract

Background: Merkel cell carcinoma (MCC) is a rare and aggressive skin cancer with limited treatment options at advanced stages. There is a paucity of data available regarding the impact of MCC and its management on patients' lives. This study aimed to address this gap by interviewing patients with metastatic MCC entering a trial of an immunotherapy (avelumab).

Methods: In a single-arm, open-label, international, phase 2 trial in patients with stage IV, chemotherapy-refractory, histologically confirmed MCC, patients were invited to participate in semi-structured phone interviews. These were conducted before avelumab administration. Interview transcripts were analysed qualitatively to identify concepts important to patients relating to their experience of metastatic MCC and its management.

Results: Nineteen patients were interviewed. Most reported MCC to be painless and asymptomatic. They reported being often misdiagnosed and described a long process before receiving the correct diagnosis. They also reported a feeling of "shock" after being informed of the severity and seriousness of their cancer. Overall, patients did not report impaired physical and cognitive capacities or impact on daily lives, either before or after diagnosis. However, patients and their relatives reported feelings of "worry" and "fear" about the unknown outcome of the disease. Chemotherapy and radiotherapy negatively affected patients physically and psychologically in their everyday lives.

Conclusions: MCC disease was not perceived by the interviewed patients to result in severe functional limitations or to severely impact everyday activities, but was associated with substantial negative psychological impact. In contrast, chemotherapy and radiotherapy for MCC are highly debilitating and disrupt patients' lives. CLINICALTRIALS.

Gov identifier: NCT02155647.

Conflict of interest statement

Funding

This study was funded by and is part of an alliance between Merck KGaA and Pfizer, Inc, NY, USA.

Conflict of interest

MB is an employee of Merck KGaA, Darmstadt, Germany. CDB and IG, employees of Mapi at the time the study was performed, and JL, an employee of Mapi, were paid consultants to Merck KGaA, Darmstadt, Germany. HK has served on advisory boards for Amgen, Celldex, Compass Therapeutics, EMD Serono, Merck, Prometheus, Sanofi and Turnstone Biologics. He has also served on a speakers’ bureau for Merck, but all honoraria were given to Rutgers University. LM is an employee of EMD Serono, Boston, USA. The authors did not receive payment for authorship.

Informed consent

All participants provided written informed consent prior to any study-related procedures, including patient interviews. The study was reviewed and approved by all local applicable institutional review boards and ethics committees.

Figures

Fig. 1

Conceptual model of the journey of patients with Merkel cell carcinoma (MCC) and its management from before diagnosis to study entry. Red: concepts related to an impact; yellow: concepts related to symptoms/side effects; purple: concepts related to perceived treatment efficacy and expectations; light orange: concepts related to patients’ reaction at diagnosis; light green: concepts related to descriptive facts; light blue: concepts related to diagnostic issues